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Background: The African Network for Evidence-to-Action in Disability (AfriNEAD) is a leading role player in Africa promoting evidence-informed policies and practices for disability inclusion on the continent. This article presents findings of a desktop review that explored trends of disability research in the AfriNEAD affiliated countries. Objectives: The review explored trends of research that has been published by members of the disability research community who are contributing to AfriNEAD Conferences. Method: A Google scholar search was conducted using names of researchers who presented articles at the first six AfriNEAD Conferences, recording peer-reviewed journal publications by each author according to the eight AfriNEAD research focus areas. This was followed by a hand search of all articles published in the African Journal of Disability from AfriNEAD affiliated countries. Results: There is an exponential increase in the number of peer reviewed journal publications from AfriNEAD affiliated countries over the last two decades. Collaborations are common among authors within the same African country. International collaborations are common among authors from Africa with authors from the Global North. Conclusion: African researchers need to network and collaborate more across Africa, to promote disability research in countries where research is scarce and to focus more on research areas that are not receiving attention. Contribution: The desktop exploration is a first step for AfriNEAD to get a baseline understanding of published disability research in the countries affiliated to the network. Further research is required to understand these trends and to provide evidence necessary to address the identified gaps.

The need for rehabilitation is increasing on a global level due to a rise in non-communicable diseases, aging and medical advances, and in South Africa (SA), due to the quadruple burden of disease. More information is required regarding rehabilitation scope and practices in SA to optimize the provision of rehabilitation interventions in the context of the transforming health care sector in SA, a low-to-middle-income country (LMIC). The purpose of this study is to explore the perspectives of South African rehabilitation stakeholders on the landscape of rehabilitation in SA. A descriptive qualitative study, with an interpretive approach, was used to explore stakeholder perspectives on rehabilitation practices in the public health care sector of SA. Semi-structured interviews were conducted with 12 rehabilitation stakeholders. Data were analyzed using a combination of deductive and inductive processes to generate themes and categories. We identified 5 main themes, with subsequent categories and sub-categories. The themes include a composite definition of rehabilitation, core elements of rehabilitation provision, challenges affecting rehabilitation practices, the importance of policy implementation, and the progress of rehabilitation in SA. Despite a common understanding of rehabilitation practices in SA amongst stakeholders, many persistent challenges hamper the delivery of effective rehabilitation services. We recommend that further research explore the rehabilitation needs of end-users, together with collaborative research for priority setting on the translation of policy to practice ensuring equitable and quality rehabilitation service delivery.

Background: The need for rehabilitation in South Africa has doubled between 1990 and 2017 and is expected to increase in the coming years. However, the rehabilitation needs of South Africans (and globally) remain largely unmet. Establishing a common understanding of the value of rehabilitation can inform clinical practice and policymaking to achieve Universal Health Coverage (UHC). Objectives: This study aims to explore the value of rehabilitation services in South Africa’s public healthcare sector by gathering perspectives from stakeholders. The goal is to inform policy decisions related to the implementation of National Health Insurance (NHI) in South Africa. Method: The study used a phenomenological approach and interpretivist paradigm. Semi-structured interviews were conducted face-to-face, online, or telephonically with 12 stakeholders from various rehabilitation sectors. The value of rehabilitation was analysed and categorised into five main categories: context, service delivery, patient outcomes, economic and financial components, and collaboration within and between sectors. Results: The value of rehabilitation was found to be multifaceted, because of the varying health, economic, and social challenges faced by many South Africans. Conclusion: The study identified components of value-based rehabilitation that should be prioritised in the proposed NHI of South Africa. Future research should explore all stakeholder perspectives, including patients, and provide empirical evidence of rehabilitation’s economic and societal value. Contribution: We highlight priority areas that are central to the value of rehabilitation in South Africa and other low- and middle-income countries (LMICs). Tailoring rehabilitation services to patient and community needs is crucial for achieving value-based care. Given South Africa’s commitment to the United Nations Convention on the Rights of Persons with Disabilities, prioritising rehabilitation remains essential.

Background: Lack of support systems in the management of health and rehabilitation related problems, including the stigma of giving birth to a child with disability, results in some parents ignoring the doctor’s prognosis of lifelong disability. Objectives: The study was conducted in the Eastern Cape province (ECP) of South Africa (SA) on parents’ views in caring for children with disability in an area with minimal health facilities in a rural setting. Method: Data was collected using exploratory descriptive qualitative methods. A Xhosa-speaking researcher facilitated six focus group discussions and conducted one individual in-depth interview with 37 parents or caregivers of children with disability residing at Happy home. Only one father was interviewed. Thematic analysis was used in interpreting data obtained from interviews. Results: The findings revealed themes indicating key concerns of parents, which were as follows: challenges with disability diagnosis, negative attitudes of health professionals, health and rehabilitation related problems, and lack of support from families and community. Conclusion: Caring for children with disability in a rural setting where services are minimal or not available to the poorest people who mostly need such services is not easy. Thus, to respond appropriately to the health and support needs of children with disability, it is crucial to understand the social context and needs of their families and caregivers. Due to size of the study, findings cannot be generalised. Recommendations are made for further studies to explore the vital issues affecting parents of children with disabilities.

This article is informed by one of the outcomes of a PhD study which explored an understanding of spirituality that informs wellbeing within four indigenous South African contexts. Literatures on the negative impact of the historical subjugation of African indigenous understanding of spirituality and beingness abound. However, there is a paucity of literature focused on the spaces of transition created by this subjugation of African indigenous spiritual knowledges and ways of being, and how these created spaces interact with context to inform the understanding and experience of health and wellbeing in African indigenous communities.

Abstract Background It is estimated that over one billion persons worldwide have some form of disability. However, there is lack of knowledge and prioritisation of how to serve the needs and provide opportunities for people with disabilities. The community-based rehabilitation (CBR) guidelines, with sufficient and sustained support, can assist in providing access to rehabilitation services, especially in less resourced settings with low resources for rehabilitation. In line with strengthening the implementation of the health-related CBR guidelines, this study aimed to determine what workforce characteristics at the community level enable quality rehabilitation services, with a focus primarily on less resourced settings. Methodology This was a two-phase review study using (1) a relevant literature review informed by realist synthesis methodology and (2) Delphi survey of the opinions of relevant stakeholders regarding the findings of the review. It focused on individuals (health professionals, lay health workers, community rehabilitation workers) providing services for persons with disabilities in less resourced settings. Results Thirty-three articles were included in this review. Three Delphi iterations with 19 participants were completed. Taken together, these produced 33 recommendations for developing health-related rehabilitation services. Several general principles for configuring the community rehabilitation workforce emerged: community-based initiatives can allow services to reach more vulnerable populations; the need for supportive and structured supervision at the facility level; core skills likely include case management, social protection, monitoring and record keeping, counselling skills and mechanisms for referral; community ownership; training in CBR matrix and advocacy; a tiered/teamwork system of service delivery; and training should take a rights-based approach, include practical components, and involve persons with disabilities in the delivery and planning. Conclusion This research can contribute to implementing the WHO guidelines on the interaction between the health sector and CBR, particularly in the context of the Framework for Action for Strengthening Health Systems, in which human resources is one of six components. Realist syntheses can provide policy makers with detailed and practical information regarding complex health interventions, which may be valuable when planning and implementing programmes.

Background The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) is a milestone in the recognition of the human rights of persons with disabilities, including the right to health and rehabilitation. South Africa has signed and ratified the CRPD but still has a long way to go in reforming policies and systems in order to be in compliance with the convention. This paper seeks to fill a gap in the literature by exploring what the barriers to the implementation of the health and rehabilitation articles of the CRPD are, as identified by representatives of the disability community. Methods This investigation used a qualitative, exploratory methodology. 10 semi-structured interviews of a purposive sample of representatives of disabled persons organizations (DPOs), non-governmental organizations (NGOs), and service providers in South Africa were conducted. Participants were drawn from urban, peri-urban, and rural settings in order to reflect diverse perspectives within South Africa. Data was analysed using a multi-stage coding process to establish the main categories and relationships between them. Results Six main categories of barriers to the implementation of the health and rehabilitation articles of the CRPD were identified. Attitude barriers including stigma and negative assumptions about persons with disabilities were seen as an underlying cause and influence on all of the other categories; which included political, financial, health systems, physical, and communication barriers. Conclusion The findings of this study have important implications for strategies and actions to implement the CRPD. Given the centrality of attitudinal barriers, greater sensitization around the area of disability is needed. Furthermore, disability should be better integrated and mainstreamed into more general initiatives to develop the health system and improve the lives of persons living in poverty in South Africa.

Background: People with spinal cord injury (SCI) often have great need for healthcare services, but they report access challenges. Primary care access to people with SCI has not been explored in Botswana. Objective: This study aimed to identify barriers and facilitators that users with spinal cord injuries experience in accessing primary care services in the greater Gaborone area, Botswana. Methods: A quantitative, cross-sectional, observational study was conducted. Data were collected with a structured questionnaire from 57 participants with traumatic and non-traumatic SCI. Descriptive and inferential analysis was performed. Results: The male to female ratio was 2.8:1. The mean age of participants was 40 years (standard deviation 9.59). Road traffic crashes caused 85% of the injuries. Most participants visited primary care facilities between 2 and 10 times in the 6 months before the study. Participants were satisfied with the services (63%) and felt that facilities were clean (95%) and well maintained (73.5%). Preferential treatment, respect, short waiting times and convenient hours facilitated satisfaction with services. Availability was hampered by insufficient provider knowledge on SCI as indicated by 71.9% of participants, and shortage of consumables (80.7%). Structural challenges (42.1% could not enter the facility by themselves and 56.5% could not use the bathroom) and lack of height-adjustable examining couches (66.7%) impeded accessibility. Cost was incurred when participants (64.9%) utilised private health services where public services failed to address their needs. Conclusion: Primary care services were mostly affordable and adequate. Availability, acceptability and accessibility aspects created barriers.

Background: Vulnerability in the past has sometimes been measured and understood in terms of checklists or common understanding. It is argued here that vulnerability is a more complex issue than this. Although checklists of vulnerable groups are important, they do not capture the essence and dynamics of vulnerability. Objective: The case of rural health vulnerability in South Africa is discussed to show that classifying people into vulnerable groups does not portray the complexity and intricacies of what it means to have vulnerability. We also wish to show that there are different kinds of vulnerabilities, and the difference between access vulnerability and illness vulnerability is highlighted. Methods: As part of a larger study, this case study is presented to show how vulnerability in a poor rural community in South Africa has to be understood in a contextual and dynamic manner as opposed to a static manner. Results: Family and social dynamics can influence health. For example, fractured families were seen as a vulnerable issue within the community, while being a person with a disability can lead to isolation and callous attitudes towards them. It is these family and social dynamics that lead proximally to vulnerability to ill health. Conclusions: A contextual approach can assist in giving a more layered understanding of vulnerability than a checklist approach can do. Interventions to change health cannot be addressed simply by medical means. Social conditions need to be changed, and part of changing social conditions is the process of assisting those who are isolated or experience themselves as vulnerable to reconnect with others in the community. Poverty leads to social exclusion; social and family inclusion may be key to well-being.

A pilot project to develop and implement a mobile smartphone application (App) that tracks and maps assistive technology (AT) availability in southern Africa was launched in Botswana in 2016. The App was developed and tested through an iterative process. The concept of the App (AT-Info-Map) was well received by most stakeholders within the pilot country, and broader networks. Several technical and logistical obstacles were encountered. These included high data costs; difficulty in accessing AT information from the public healthcare sector, the largest supplier of AT; and the high human resource demand of collecting and keeping up-to-date device-level information within a complex and fragmented supply sector that spans private, public and civil society entities. The challenges were dealt with by keeping the data burden low and eliminating product-level tracking. The App design was expanded to include disability services, contextually specific AT categories and make navigation more intuitive. Long-term sustainability strategies like generating funding through advertisements on the App or supplier usage fees must be explored. Outreach and sensitisation programmes about both the App and AT in general must be intensified. The project team must continually strengthen partnerships with private and public stakeholders to ensure ongoing project engagement. The lessons learnt might be of value to others who wish to embark on initiatives in AT and/or implement Apps in health or disability in southern Africa and in low-resourced settings around the world.

Background: There is international evidence that people with disabilities face barriers when accessing primary healthcare services and that there is inadequate information about effective interventions that work to improve the lives of people with disabilities, especially in low-income and middle-income countries. Poor rural residents generally experience barriers to accessing primary healthcare, and these problems are further exacerbated for people with disabilities. Objective: In this study, we explore the challenges faced by people with disabilities in accessing healthcare in Madwaleni, a poor rural Xhosa community in South Africa. Design: Purposive sampling was done with 26 participants, using semi-structured interviews and content analysis to identify major themes. Results: This study showed a number of barriers to healthcare for people with disabilities. These included practical barriers, including geographical and staffing issues, and attitudinal barriers. Conclusions: It is suggested that although there are practical barriers that need to be addressed, attitudinal barriers could potentially be addressed more easily and cost effectively.

Background: Major lower limb amputation has a severe impact on functional mobility. Mobility can be salvaged with a prosthesis, but this is not always the best option. It is often difficult to decide whether to refer someone for a prosthesis or not. A prosthetic screening tool ‘Guidelines for Screening of Prosthetic Candidates: Lower Limb’ was developed and is used for prosthetic prescription in parts of the Western Cape province of South Africa. Objectives: This study aimed to explore the suitability of the tool ‘Guidelines for Screening of Prosthetic Candidates: Lower Limb’ for use in the Eastern Cape province of South Africa. Method: A qualitative study was conducted with conveniently sampled occupational therapists (OTs) (n = 10), physiotherapists (PTs) (n = 12) and prosthetists (n = 6) in government employment in the Buffalo City Metro Municipality. Participants were trained in the use of the tool and used it for four weeks with patients. Their experiences of the tool were assessed through three focus group discussions with emergent themes being identified during inductive data analysis. Findings: Participants indicated that the tool could assist with prosthetic prescription, goal setting, communication and teamwork. They thought that the tool was multidisciplinary in nature, comprehensive and practical. Findings showed a lack of teamwork in this study setting. Resistance to change and a lack of time might also hamper implementation of the tool. Conclusion: The tool can assist with managing the backlog for prostheses and to guide prosthetic prescription in the Eastern Cape province. Clinical implications: A prosthesis can help to salvage functional mobility after lower limb amputation. However, not all people who had above knee amputation manage to walk with a prosthesis. The tool reported on in this article provides information that can guide prosthetic prescription and rehabilitation goals.

Background: Twenty-two years after the promulgation of a plethora of progressive health policies since 1994, the South African public health system reflects a number of stumbling blocks regarding implementation. Rehabilitation professionals are not sufficiently equipped nor allowed the opportunity to comprehensively implement Primary Healthcare (PHC) from a bottom-up approach, thus engaging communities. Training on addressing social health determinants and their impact on ill-health and health outcomes is inadequate. The inadequate understanding of the advocacy role that rehabilitation professionals could play in addressing social health determinants remains a challenge in healthcare. Rehabilitation, a pillar of PHC, remains poorly understood in terms of its role within the health system. Aim: We argue for rehabilitation as a vehicle for addressing social determinants of health with community service practitioners playing a critical role in addressing the inequities within the healthcare package. Setting: The article reflects the opportunities and challenges faced by rehabilitation community service therapists in the delivery of rehabilitation services in a rural area of the Eastern Cape province of South Africa. Methods: A single case study from the perspective of a researcher was used to explore the experience and reflection of the first author during her community service as an occupational therapist. Results: The case study highlights some existing gaps within the delivery of rehabilitation services in the rural Eastern Cape. A community service package with a specific approach towards addressing social determinants of health for persons with disability at a community level is suggested. Conclusion: Advocating for a rehabilitation service package to shift to community-based levels is critical. It is envisaged that a community-based approach will facilitate an understanding of the barriers faced by persons with disabilities as constituting disability, thus facilitating learning about the disabling consequences of the rural environment coupled with the system as experienced by persons with disabilities.

Background: There are many factors that influence access to public health services, such as the context people live in, the existing health services, and personal, cultural and community factors. People with disabilities (activity limitations), through their experience of health services, may offer a particular understanding of the performance of the health services, thus exposing health system limitations more clearly than perhaps any other health service user. Aim: This article explores how activity limitations interact with factors related to context, systems, community and personal factors in accessing public health care services in South Africa. Setting: We present four case studies of people with disabilities from four low-resource diverse contexts in South Africa (rural, semi-rural, farming community and peri-urban) to highlight challenges of access to health services experienced by people with activity limitations in a variety of contexts. Methods: One case study of a person with disabilities was chosen from each study setting to build evidence using an intensive qualitative case study methodology to elucidate individual and household experiences of challenges experienced by people with activity limitations when attempting to access public health services. In-depth interviews were used to collect data, using an interview guide. The analysis was conducted in the form of a thematic analysis using the interview topics as a starting point. Results: First, these four case studies demonstrate that equitable access to health services for people with activity limitations is influenced by a complex interplay of a variety of factors for a single individual in a particular context. Secondly, that while problems with access to public health services are experienced by everyone, people with activity limitations are affected in particular ways making them particularly vulnerable in using public health services. Conclusion: The revitalisation of primary health care and the introduction of national health insurance by the Health Department of South Africa open a window of opportunity for policy makers and policy implementers to revisit and address the areas of access to public health services for people with activity limitations.

This paper explores differences in experienced environmental barriers between individuals with and without disabilities and the impact of additional factors on experienced environmental barriers. Data was collected in 2011-2012 by means of a two-stage cluster sampling and comprised 400-500 households in different sites in South Africa, Sudan Malawi and Namibia. Data were collected through self-report survey questionnaires. In addition to descriptive statistics and simple statistical tests a structural equation model was developed and tested. The combined file comprised 9,307 participants. The Craig Hospital Inventory of Environmental Factors was used to assess the level of environmental barriers. Transportation, the natural environment and access to health care services created the biggest barriers. An exploratory factor analysis yielded support for a one component solution for environmental barriers. A scale was constructed by adding the items together and dividing by number of items, yielding a range from one to five with five representing the highest level of environmental barriers and one the lowest. An overall mean value of 1.51 was found. Persons with disabilities scored 1.66 and persons without disabilities 1.36 (F = 466.89, p < .001). Bivariate regression analyses revealed environmental barriers to be higher among rural respondents, increasing with age and severity of disability, and lower for those with a higher level of education and with better physical and mental health. Gender had an impact only among persons without disabilities, where women report more barriers than men. Structural equation model analysis showed that socioeconomic status was significantly and negatively associated with environmental barriers. Activity limitation is significantly associated with environmental barriers when controlling for a number of other individual characteristics. Reducing barriers for the general population would go some way to reduce the impact of these for persons with activity limitations, but additional and specific adaptations will be required to ensure an inclusive society.

Background: Rehabilitation is important for persons with disabilities as it contributes to their sense of autonomy, self-worth and social participation, and improves their quality of life. Improving the quality of rehabilitation services requires the dialogue of patients’ perceptions with those of service providers, in order to recommend informed reform. Objective: The objective was to explore the experiences of persons with physical disabilities and service providers, regarding the multi-disciplinary rehabilitation services provided at a community-based out-patient rehabilitation centre. Methods: A qualitative, exploratory study design was used to collect the data. A focus group was conducted with conveniently selected persons with physical disabilities. Three in-depth interviews were conducted with purposively selected key informants. All ethical considerations were adhered to during the implementation of the study. Results: Patients and service providers had different experiences regarding accessibility to rehabilitation services, and similar experiences with patient education and intensity of rehabilitation. Although the patients experienced that the service providers had sufficient knowledge and skills to manage them, services providers expressed that they lacked certain skills. Conclusions: The experiences expressed highlighted the need to improve rehabilitation services in terms of increasing the capacity of service providers and providing transport services for persons with disabilities.

Background: The ‘EquitAble’ project carried out content analyses of policies and collected and analysed qualitative and quantitative data concerning access to health services in Sudan, Malawi, Namibia and South Africa. Our particular concern was to address the situation of people with disabilities, although not in isolation from other marginalised or vulnerable groups. Objectives: This article reports on the content, context, process and impact of project EquitAble, funded by the European Commission Seventh Research Framework Programme, which brought together researchers from Ireland, Norway, South Africa, Namibia, Sudan and Malawi. Method: After the 4-year project ended in February 2013, all members of the consortium were asked to anonymously complete a bespoke questionnaire designed by the coordinating team. The purpose of the questionnaire was to capture the views of those who collaborated on the research project in relation to issues of content, context, process and impact of the EquitAble project. Results: Our results indicated some of the successes and challenges encountered by our consortium. Conclusion: We identified contextual and process learning points, factors often not discussed in papers, which typically focus on the reporting of the ‘content’ of results.

This African Journal of Disability supplement focuses on papers presented at the third AfriNEAD Symposium in 2011. In this closing editorial, we want to give an overview of the rationale and major modes of operation of the African Network for Evidence-to-Action on Disability (AfriNEAD) with special focus on recommendations made at the 2011 AfriNEAD Symposium. AfriNEAD is guided and informed by the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) for its research themes. The issues that emerged from AfriNEAD 2011 ranged from children and youth with disabilities; education across the lifespan; economic empowerment; the development process in Africa; health, HIV and AIDS and community-based rehabilitation; holistic wellness; to research evidence and utilisation. Disability-related stigma, the value of emancipatory research and the need to recognise a broader scope of valid methodologies were also highlighted.

Background: Disability research in the global South has not received significant critical consideration as to how it can be used to challenge the oppression and marginalisation of people with disabilities in low-income and middle-income countries. The Southern Africa Federation of the Disabled (SAFOD) embarked on a programme to use research to influence policy and practice relating to people with disabilities in Southern Africa, and commissioned an audit on research expertise in the region. In this article, a research audit is reported on and situated in a framework of mancipatory research. Objectives: This article sets out to describe a preliminary audit of disability research in the southern African region and to draw conclusions about the current state of disability research in the region and make recommendations. Method: The research method entailed working with disability researchers in the ten SAFOD member countries and utilising African disability networks hosted on electronic media. Disability researchers working in the region completed 87 questionnaires, which were reviewed through a thematic analysis. Results: The discussion of results provides a consideration of definitions of disability; the understanding of disability rights, research topics and methodologies; the participation of people with disabilities in research; and the challenges and opportunities for using research to inform disability activism. Conclusion: The conclusion highlights critical issues for future research in the region, and considers how a disability researcher database can be used as a tool for disability organisations to prioritise research that serves a disability rights agenda.

This paper seeks to heighten awareness about the need to include indigenous knowledge in the design and implementation of research, particularly disability research, in Africa. It affirms the suitability of the Afrocentric paradigm in African research and argues the necessity for an emancipatory and participatory type of research which values and includes indigenous knowledge and peoples. In the predominantly Western-oriented academic circles and investigations, the African voice is either sidelined or suppressed because indigenous knowledge and methods are often ignored or not taken seriously. This paper posits that to be meaningful and empowering, African-based research must, of necessity, include African thought and ideas from inception through completion to the implementation of policies arising from the research. In this way the work is both empowering and meaningful for context-specific lasting impact.

Poor people with disabilities who live in poor rural societies experience unique problems in accessing health services. Their situation is influenced by multiple factors which unfold and interplay throughout the person’s life course. The difficulties do not only affect the person with a disability and his or her family, but also impact on the relevant care unit. The barriers are rooted in a life in poverty, upheld and maintained by poverty-reinforcing social forces of the past and the present, and reinforced by the lack of the person’s perspective of the health services. This article explores how difficulties may interact and influence access to and utilisation of health services, and how this may render health services out of reach even when they are available. The study reveals that non-compliance is not necessarily about neglect but could as well be a matter of lived poverty. The study was based on in-depth interviews with people with disabilities and family members, and semi-structured interviews with health personnel. The data analysis is contextual and interpretive. When offering health services to people with disabilities living in resource-poor settings, services should take into consideration the person’s history, the needs, and the resources and abilities of the family group. Rethinking access to health services should transcend a narrow medical institutionalization of health professional’s training, and include a patient’s perspective and a social vision in understanding and practice. Such rethinking requires health service models that integrate the skills of health professionals with the skills of disabled people and their family members. Such skills lie dormant at community level, and need to be recognized and utilized.